Help, I’ve Fallen and I Can’t Get Up

So we’ve all tripped or slipped and fell in our lifetimes, but I can without a doubt say that I’ve fallen more than you have (unless you have FSHD or some other disability). Throughout high school I probably fell at least 20 times in the hall…in front of at least 100 people…embarrassing (and these were just the times I fell in school). unnamed (an actual status I made on facebook 3 years ago). These falls weren’t due to clumsiness, they happened because like I have said before, my balance is not very good. I don’t have much muscle in my hamstrings and abs because of my FSHD so when I trip, I can’t catch myself like most people can because I don’t have those hamstring muscles. I remember one time, I was carrying a salad from the cafeteria¬†with one of my friends and when I got to the stairs, I tripped on the first step and my salad went everywhere…so that was fun. Mostly, these falls were just embarrassing. I would fall on my face or ass in front of so many classmates, some might have even been a guy I had a crush on (but I’ll never know). Usually I would just laugh it off if I was with my friends, but if I was alone, it was pretty awkward. Everyone would just stare at me on the ground or try to help me. I always hated being the center of attention, especially when it was a bad situation like that.

Over the years, I have gotten so sick of falling that I can’t even laugh it off anymore. It’s become a major annoyance in my life and 24/7 I have to carefully watch where I’m stepping so that I don’t trip over anything or slip. Most recently, I was carrying in a crate full of stuff from my car. I had just got back from college and my stuff had been sitting in my hot car for a few days so I finally decided to bring it in. I picked up the crate and the whole time I thought in my head, I’m not gonna trip, I’m not gonna trip, and I made it all the way to the door, carefully watching each step. Once I stepped inside I thought I was safe but I tripped right over the welcome mat inside the house. My crate and everything in it went flying all over the room and I fell right on my stomach. The worst part was that there was a big candle in the crate that had melted in the car. When it hit the ground, the wax went all over the floor and I had to spend 20 minutes cleaning it off.

So like I said, I used to laugh it off when I was younger, mostly because it was easy for me to get up and I didn’t look like I had something wrong with me. It’s a little different now because my disability has gotten much worse since high school and it’s become much harder for me to get up off the ground. So now when I fall, I usually end up shedding a few tears. It’s not because I’m a baby, or a wuss or I got hurt, it’s just because I’m so frustrated and I can’t help the tears from falling. When I was in the airport a few months ago, I slipped and fell on some sesame sauce on the ground next to a Chinese fast food place. Tears starting rolling down my face. My sister and dad kept asking me if I was ok, and if I was hurt, etc., which just made me cry more. It’s hard for me to stop especially when everyone in the airport terminal is staring at me and everyone’s asking if I’m ok. I think it’s just frustration. I can’t do anything to stop myself from falling once I’ve tripped, so I feel useless and feel like I can’t even fight the disability. It’s almost like it’s taken over my body and I can’t do anything to make it stop or at least make it less known. I just want to be able to control what I do and not fall every time there’s sauce on the ground or a bump in the road.

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3 thoughts on “Help, I’ve Fallen and I Can’t Get Up

  1. Pingback: Why am I always crying? | Living With FSHD

  2. I just read the rest of your posts, and wow… it is as if I am reading about myself. You are super strong lady, and I admire the heck out of you! Your blog is actually the most informative information I’ve read on the internet about living with this disease and also about the recovery after the scapular fusion surgery. I sent the link to my parents today, and they were also really impressed and grateful for your blog. They feel much better about me getting this surgery after reading your posts (they are still nervous, but at least we all have a better idea of what to expect). I moved to San Francisco about a year ago, and I think the stress of moving to a new city and starting a demanding new job really took a toll on my body. I have lost almost complete movement in my right arm over the past few months. I have to eat with my left hand, even though I am dominant with my right hand. I know the pain and recovery period is going to be pretty intense from the surgery, but I also know that it will be worth it to live a slightly more normal life and live with less pain in my back and shoulders. Reading your blog has really inspired me to come out publicly to my friends and colleagues about my FSHD. I think it is important for me to share my information so that I may be able to help others the way that you have helped me. I’ve tried so hard to keep it a secret, because I don’t want people to treat me differently. I’m an incredibly active and outdoorsy person, and I am always on the go. I’ve always been scared to talk about it, because it makes it more real, and I just want to live a normal life. But the truth is, I am different. I try to be strong, but I too feel like crying every time I trip and pretend to laugh along with my friends about my clumsiness. Anyway, I just wanted to say thank you so much for sharing. It takes a lot of courage to open up about a disorder. You are also an excellent writer, and I look forward to following more posts on your blog. =)

    Oh, and don’t ever forget that you are a rare bird. Our bodies are uniquely beautiful, and we are stronger for having lived with this. I will definitely be in touch via email.

    • Wow thank you so much. That was one of the best things I’ve seen all day. I’m so glad that my blog has actually reached other people with this disability. I know exactly how you feel when you say you try to laugh along with your friends and how hard it is to tell people. I always feel like when I tell someone they are going to look at me differently. I know this disability is hard to deal with, especially since it’s not one that you really notice until you’re a teenager or so. I have told a lot of people about it and someday (hopefully this year) I am going to work up the courage to share this blog with friends on Facebook and other platforms to really raise awareness about the disability. I think about how much of a better person I have become in the past 10 years and I can honestly say a lot of it had to do with my fsh. It’s made me look at things in such a different way. Also in regards to the surgery, i have so much to tell you, but the number one benefit from this is really the looks for me. I know I will be so much more confident in myself knowing that I won’t have to cover up and be self conscious about what people think is “wrong with me.” Thanks again for that comment. This is exactly what I wanted to happen with this blog and I hope I can raise more awareness someday.

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